European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO-NMD).

Autor: Van Damme P; Department of Neurology, University Hospitals Leuven, Department of Neuroscience KU Leuven, Center for Brain & Disease Research VIB, Leuven, Belgium., Al-Chalabi A; Department of Basic and Clinical Neuroscience, Maurice Wohl Clinical Neuroscience Institute, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK., Andersen PM; Department of Clinical Science, Neurosciences, Umeå University, Umeå, Sweden., Chiò A; Rita Levi Montalcini Department of Neuroscience, University of Turin, Turin, Italy.; Azienda Ospedaliero Universitaria Città della Salute e della Scienza di Torino, Turin, Italy., Couratier P; Centre SLA, CHU Limoges, Limoges, France., De Carvalho M; Faculdade de Medicina, Instituto de Medicina Molecular, Universidade de Lisboa, Centro Académico de Medicina de Lisboa, Lisbon, Portugal., Hardiman O; Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland., Kuźma-Kozakiewicz M; Department of Neurology, Medical University of Warsaw, Warsaw, Poland., Ludolph A; Department of Neurology, Ulm University, German Center for Neurodegenerative Diseases (DZNE), Ulm, Germany., McDermott CJ; Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK., Mora JS; ALS Unit, Department of Neurology, Hospital Universitario San Rafael, Madrid, Spain., Petri S; Department of Neurology, Hannover Medical School, Hannover, Germany., Probyn K; Cochrane Response, London, UK., Reviers E; EUpALS (European Organization for Professionals and Patients with ALS) and ALS Liga België, Leuven, Belgium., Salachas F; Neurology Department, Paris ALS Center, Groupe Hospitalier Pitié-Salpêtrière, AP-HP, Paris, France., Silani V; Department of Neuroscience and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, Italy.; Department of Pathophysiology and Transplantation, Dino Ferrari Center, Università degli Studi di Milano, Milan, Italy., Tysnes OB; Department of Neurology, Haukeland University Hospital, Bergen, Norway., van den Berg LH; Department of Neurology, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands., Villanueva G; Cochrane Response, London, UK., Weber M; Neuromuscular Diseases Unit/ALS Clinic, St. Gallen, Switzerland.
Jazyk: angličtina
Zdroj: European journal of neurology [Eur J Neurol] 2024 Jun; Vol. 31 (6), pp. e16264. Date of Electronic Publication: 2024 Mar 12.
DOI: 10.1111/ene.16264
Abstrakt: Background: This update of the guideline on the management of amyotrophic lateral sclerosis (ALS) was commissioned by the European Academy of Neurology (EAN) and prepared in collaboration with the European Reference Network for Neuromuscular Diseases (ERN EURO-NMD) and the support of the European Network for the Cure ALS (ENCALS) and the European Organization for Professionals and Patients with ALS (EUpALS).
Methods: Grading of Recommendations Assessment, Development, and Evaluation (GRADE) methodology was used to assess the effectiveness of interventions for ALS. Two systematic reviewers from Cochrane Response supported the guideline panel. The working group identified a total of 26 research questions, performed systematic reviews, assessed the quality of the available evidence, and made specific recommendations. Expert consensus statements were provided where insufficient evidence was available.
Results: A guideline mapping effort revealed only one other ALS guideline that used GRADE methodology (a National Institute for Health and Care Excellence [NICE] guideline). The available evidence was scarce for many research questions. Of the 26 research questions evaluated, the NICE recommendations could be adapted for 8 questions. Other recommendations required updates of existing systematic reviews or de novo reviews. Recommendations were made on currently available disease-modifying treatments, multidisciplinary care, nutritional and respiratory support, communication aids, psychological support, treatments for common ALS symptoms (e.g., muscle cramps, spasticity, pseudobulbar affect, thick mucus, sialorrhea, pain), and end-of-life management.
Conclusions: This update of the guideline using GRADE methodology provides a framework for the management of ALS. The treatment landscape is changing rapidly, and further updates will be prepared when additional evidence becomes available.
(© 2024 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)
Databáze: MEDLINE